Most days, I look in the mirror, and I don’t recognize who I see. I stare at the reflection but am unfamiliar with this new person. I often wonder who she will become. Whatever that looks like, I have not reached that destination. But I believe, slowly and surely, usually two steps forward and one step back, that I am getting there.
June 5, 2020, is a day I wish I could forget. It has been over three years, and the memory is as fresh as though it happened yesterday. It was just after the beginning of the COVID-19 Pandemic. Craig was working from home; I was trying to keep the twins’ heads above water with school while playing with Conner, who had just turned four. Then came the email.
“We Have Information That Could Seriously Impact the Health of Your Son.”
At first, I thought it had to be some joke or scam that had become all too common during the pandemic. As I read further, I slowly realized that it was not, and I crumbled in a heap on the floor.
Diagnosis day (or D-Day as we like to call it) is a day we in the rare disease community all dread. Days, months, and years can pass, and that day can still bring us to our knees. As we settle into this new reality, the sting of receiving that news is as fresh as the day it happened. The trauma is real, and we are stronger in sharing our stories and supporting one another.
What I do know to be true is that since Conner’s diagnosis and resulting transplant, I have never met more wonderful people than I have in the rare disease community. There is a silent understanding and compassion that transcends physical boundaries. No words are needed.
Our family hopes to be of whatever support we can to other rare disease families as they navigate the after.
